Tuesday, August 4, 2015

Never Give Up Hope

The Price of Silence: A Mom's Perspective
on Mental Illness, is now available in
paperback.

Six Lessons I Learned in My Ten Year Quest for Treatment

In December 2012, after a tragic school shooting in Newtown,
I thought I was the only mother in America who asked myself, “What if that’s my
son someday?” It turns out I was far from alone. Every single day since I
shared my family’s struggle in a blog post, “I Am Adam Lanza’s Mother,” nearly
three years ago, at least one parent has reached out to me with a similar story
of trying to get mental health care in a broken and fragmented system. I wanted
answers—not only for my son, but for millions of other children and families
who are struggling. As I researched the problem for my book, The Price of Silence, I also found some answers. These are six things I learned during my
family’s long and painful journey toward treatment and hope.

1. Speak up. You are your child’s most powerful advocate. Too
many parents of children who have mental illness suffer in shame and silence,
or are even in denial about their child’s illness. If your child is very young
and exhibits behaviors that seem abnormal—frequent night terrors, excessive
tantrums, or sensitivity to noise, for example—talk to your pediatrician, and
ask for a referral to a specialist. If a medical professional tells you, “Oh,
he’s just a boy,” or “She’ll grow out of it,” get another opinion. If your
adolescent comes to you with mental health concerns, always take them
seriously. More than 4,600 young people ages 10-24 die by suicide each year.

2. Find support and resources. Your local NAMI or Federation of
Families can be a great place to start. Organizations like ChildMind.org,
AtWitsEnd.org, and Understood.org connect parents with information and
resources as well. Finally, Facebook groups can provide comfort and a safe
space to share your challenges with people who understand. To protect their members,
many of these groups are secret, but you can message me, and I’ll connect you.

3. Explore multiple treatment options. While medications are an
important tool in treating mental illness, they don’t work the same way for
everyone, and some have serious side effects. Educate yourself about the risks
and benefits, and work with your child’s doctor to identify the most effective
treatments. Many children who have mental illness also benefit from other
therapies. Young children might do well with Parent-Child Interaction Therapy.
Applied Behavior Analysis has been successful with children who have autism. My
son benefits greatly from traditional psychotherapy, which helps him to manage
the anxiety he feels because of his bipolar disorder, and from occupational therapy,
which helps him with his sensory processing issues. And his smart phone has
also been a useful tool for him, helping him with everything from medication
adherence to stress management.

4. Work with your child’s school to ensure that he or she has
educational support. Children who have mental illness, especially those who
live in poverty, are too often shunted into a school-to-prison pipeline that
denies them a meaningful future. Your child has the right to a free and
appropriate public education. The school district should work with your child
to provide accommodations and supports that will enable your child to learn and
develop. Note: special education can be baffling for parents. I recommend a
consultation with a disability rights attorney or professional special
education advocate who can walk you through the process.

5. Take care of yourself. Caregivers of children with mental
illness report stress levels similar to combat soldiers. It can be hard to manage
the financial stress of costly therapies and complex treatment schedules. In
fact, respite care is one of the services that parents most frequently report
they need. Take time for yourself every single day, even if it’s just a
15-minute walk or a few minutes to journal. It will make you a better caregiver
for your child.

6. Never give up hope. When I shared my family’s story after
the Newtown tragedy, I felt helpless and hopeless. But because I spoke up, my
son got the help he needed. He has not made any threats of harm to himself or
others for more than two years, since his last hospitalization in May 2013. He
is back in a mainstream school earning good grades, and he just finished
writing his third novel. Most important, my now 15-year-old son has really taken
charge of his illness and is becoming a powerful advocate for himself and for
others. When we accepted a joint advocacy award from Idaho Federation of
Families in 2013, he said this: “I’m not a politician. I don’t give speeches.
But I do know this: The stigma and discrimination against people with mental
illness has got to end.”

It took us ten years to find the right treatment. And our
story is not over. I do not think that anyone would say that a diagnosis of
bipolar disorder is a “happy ending” for a child. But it is an answer, and it
provided a path for us. As we follow that path, I have every hope that my son
will live the happy, productive life that he—and every child—deserves.

Really informative piece of writing, and it's definitely something we need to address more. The mental healthcare system is so backwards in this country at times, especially within the area of Children's mental health. Support groups are one of the best and easiest ways to help fix the problems associated with child mental illness in this country.

About Me

Liza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her husband, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" from Hudson Street Press is available in bookstores and online. The views expressed on this blog are entirely her own and in no way reflect the views of her employer (or anyone else, for that matter).